Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using different services. Participants reported being treated well by some people and in some places, but being treated less favourably by other people and in other places. Being treated well happened in their home, in college, in work and in their services. People were treated less well when they were out and about, using public transport, in school or work.
Whilst the value of supported employment for people with learning disabilities is well substantiated, the experiences of supporting individuals into work are less well documented. The Sustainable Hub of Innovative Employment for people with Complex needs aims to support people with learning disabilities and complex needs to find paid employment. Sixteen semi-structured interviews administered to staff members of Sustainable Hub of Innovative Employment for people with Complex needs revealed seven core themes concerning their experiences of helping people with complex needs into work. This included the practical and emotional reality of facilitating supported employment and a reflection on those factors that influenced success. This article discusses how findings relate more broadly to work in this area, and the vital roles frontline staff play in making employment happen for people with learning disabilities.
The therapeutic relationship, between client and therapist, is seen as a fundamental aspect in the outcome of therapy in the nonlearning disabled population. Literature suggests that the issues that are important in psychological therapy with the nonlearning disabled population should not lose significance with individuals with learning disabilities. Despite this, there exists a poor empirical and theoretical understanding of the complexities of the therapeutic relationship, when the individual has a learning disability. As a discipline, Counselling Psychology has a particular interest and skill base in understanding the therapeutic relationship and is therefore in a position to offer a valuable contribution to understanding the therapeutic relationship when an individual has a learning disability. Through eight semi-structured interviews, counselling psychologists currently working with individuals with learning disabilities were asked to share their experiences and understanding of the nature and role of the therapeutic relationship. A qualitative methodology guided by interpretative phenomenological analysis (IPA) enabled detailed exploration of the counselling psychologists' perspective. Themes emerged identifying the therapeutic relationship as fundamental yet difficult due to variables such as the client's experience in relationships, the need for multiple relationships, the experience of needing to facilitate reassurance and the necessary skills for therapeutic approaches. Themes also emerged relating to therapist's motivations, values and needs when working with this client group and tensions concerning individualisation and the setting culture. The themes are discussed in relation to the existing literature and implications for theory and practice are explored.
Research examining driver training for young adults with intellectual disabilities has been limited since the 1970s. The current pilot and exploratory study investigated teaching pre-driving skills (i.e. lane keeping and speed maintenance) to young adults with intellectual disabilities using an interactive driving simulator to provide dynamic and immediate feedback to participants as well as quantifiable data to researchers and educators. Four students from a post-secondary transition course for students with intellectual disabilities (age 21–23) with an average full-scale IQ of 71.5 (range 64–76) participated. Participants practised their pre-driving skills (lane keeping and speed maintenance rather than complex driving environments) on a series of driving courses as well as a coordinated muscle movement activity related to driving for 1 h a day, 5 days a week. After 27 days, two of the four participants significantly improved their lane keeping and speed maintenance skills, while two participants failed to demonstrate steady improvement.
This is a report of a service improvement pilot project undertaken at an inpatient autism service for adults with intellectual disabilities and severe challenging behaviours. Within the service, a key facet of the care pathway was the use of a biopsychosocial case formulation. Formulation meetings were led by psychology and involved a full multidisciplinary team and external representation. However, routine invitation of patients was not appropriate due to anxiety and complex communication difficulties. Therefore, the service was looking for alternative ways to incorporate the voices of patients into formulation. This report presents the case studies of four individual patients who were chosen because together they were indicative of the patient profile across the service. The study has demonstrated that it is possible to include patients' voices in their psychological formulation. For those with mild intellectual disabilities and mild autism spectrum disorder, this has been simple and extremely fruitful. For those with severe intellectual disability and severe autism spectrum disorder this has been more resource intensive and the results have been more tentative. Despite this, it has been demonstrated that it is possible to include the voices of all patients to some extent.
People with learning disabilities often have cognitive assessments (IQ tests) carried out by psychologists.
A cognitive assessment is a range of tests which help find out what people are good at and where they have difficulties.
Five people who had been given a cognitive assessment by a psychologist were interviewed.
They said it helped them to find out new things about themselves but they weren't sure why they had performed it.
Psychologists could explain more to people about why they were doing a cognitive assessment and what would happen afterwards.
Researchers and clinicians have hypothesised that cognitive assessments have the power to influence the self-identity of people with learning disabilities. This research aimed to explore the experience of a sample of people who had been given a cognitive assessment by a psychologist based in a team for people with learning disabilities. Five people who had undergone these assessments participated in semi-structured interviews, and interpretative phenomenological analysis (IPA) was used to analyse the transcripts. The analysis identified that despite the participants not understanding the purpose of the assessment, they trusted the clinicians and felt they benefitted from the experience of doing the actual assessment. However, the term ‘learning disability’ was not used by the participants who also described experiencing little agency in the process, and being dependent on the actions of others for the assessment to bring about change.
Psychological talking therapies are increasingly being sought by people when they are experiencing emotional difficulties. This is just as important for people with a learning disability as the general population but as with other services for this population, inclusion for therapy lags behind that of mainstream services. Similarly, tools for assessing the effectiveness of therapy for people with a learning disability are often limited and do not fully take account of the impact that living with a learning disability may have on peoples' feelings and sense of well-being. It was for this reason that we, the authors of this article, a Dramatherapist and Specialist Counsellor got together with initially eight but subsequently five people with a learning disability to develop an outcome measure that would be accessible and have meaning for people with a learning disability. Clinical Outcomes in Routine Evaluation – Outcome Measure (Evans et al. J Ment Health, 2000; 32, 144; Barkham et al. 1998) was selected as the measure to be modified and developed, as it was already a validated tool, was in widespread use across the country and was suitable for use across a whole range of therapeutic approaches. This article describes how inclusive research has been a key component in developing and psychometrically testing Clinical Outcomes in Routine Evaluation – Learning Disabilities. Using an outcome measure that is sensitive to the needs of people with a learning disability is a vital step towards providing evidence upon which best practice may be established.
This study investigated the effectiveness of a 1-day dysphagia training package delivered to support workers who work with adults with a learning disability. Thirty-eight support staff took part in this study. Twenty-five support staff received training, and 13 did not receive training and therefore acted as a control group. Three questionnaires were completed by each participant: immediately before, immediately after and a month after the training delivery. Questionnaires measured both confidence and knowledge. Findings indicated that there was a significant increase in knowledge and confidence scores in the trained group. These increases were largely maintained over a 1-month period. There was no significant change in confidence or knowledge scores in the untrained group.
A systematic literature review was conducted between September 2010 and April 2011 and published earlier in this journal, paper 1. The findings indicated that few studies of Self-Directed Support focused specifically on people with intellectual disabilities. The range of individuals' ability and distinction between adults with or without legal capacity have not been addressed. It is clear that Self-Directed Support is not, as yet, a viable option for all individuals with an intellectual disability. However, some who have accessed it reported an improvement in their quality of life. For Self-Directed Support to succeed for people with a wide range of intellectual disabilities, the level of awareness of its existence, and the potential barriers in relation to uptake, must be identified and addressed. This paper suggests possible strategies to maximise access to Self-Directed Support and identifies areas in which further research is required.
We looked at how staff think about the changes from working in a long-stay hospital setting to working in a home for people with learning disabilities.
In homes, staff said that they were more relaxed and could spend more time and offer more choices to residents than they could when they worked in hospital settings.
With the changes, staff often had to make their own decisions about the care they provide and were worried about getting it right.
Staff felt that their managers were looking more closely at what they were doing.
Staff said that team meetings, supervision and training helped them to cope with the changes.
This study describes research that was designed to explore the reflections and perspectives of staff who had experienced the change from institutional care to person-centred care and learn what factors had supported the change to, and continued adoption of, person-centred care. In-depth, semistructured interviews were conducted with seven participants working in residential homes for people with learning disabilities. The interviews were analysed using interpretative phenomenological analysis. Participants described positive changes, for example they were able to offer choice and spend time with residents. They perceived the work as less pressured and more relaxed. For some, this had the impact of encouraging them to work harder and freeing up their time to facilitate forming relationships with residents in the homes. Participants discussed an increased autonomy, responsibility and accountability in their work and a sense of being constantly monitored. There appeared to be reluctance amongst participants to own difficulties and anxieties associated with changes. Participants identified a number of strategies and issues that they felt had supported these changes. The research suggests some areas of consideration for implications regarding future practice in staff support and training within services for people with learning disabilities.
Institutions, and their problems, have traditionally dominated learning disability histories. We know far more about what happened in areas where councils established and/or enthusiastically used local institutions than other places. Local authorities less committed to institutional care must have relied more on family and other carers. This may have signalled a more positive, even inclusive, approach to caring for people with learning disabilities. The Halifax case study provides some evidence to support this conclusion, but limited provision and reliance on distant facilities also permitted the neglect, and even abuse, of individuals in ways that resonate with recent scandals in the care sector. Note: for accuracy, this study uses the historically correct terminology with sincere apologies for any distress this may inadvertently cause.
People with learning disabilities are sometimes prescribed psychotropic medication to help manage their challenging behaviour. This case study describes how a multicomponent behavioural intervention in conjunction with the systematic withdrawal of sodium valproate was strongly correlated with reduced aggression. No symptoms of bipolar disorder or epilepsy were observed over the course of this 135-week case study. No aggression was observed during the last 20 weeks of the study. Aggressive behaviour as a possible side effect of sodium valproate should be considered in people with learning disabilities.
There is a recognised risk of parents with learning disabilities having their children removed. Little research has investigated the impact of this on these parents. This article looks at the perceptions of nine mothers with mild learning disabilities and their experiences having had their children removed. Interview data were analysed using Interpretative Phenomenological Analysis (IPA). Findings reveal the struggles mothers with learning disabilities faced being ‘suitable mother’ – including presumed incompetence and scrutiny of parenting. Participants' responses to having had their children removed are looked at and support reviewed. Finally issues of power were highlighted throughout Participants' accounts and the impact of this is discussed. Clinical implications indicate areas for service improvement.
People with an intellectual disability in prison can be at increased risk of victimisation, segregation and isolation (Mullen ). Prison systems usually have very few resources to cater to this group's particular needs, and many people may re-enter the community with little or no rehabilitation, poor social connections, poor mental health and little chance in finding employment and living a crime-free life (Baldry et al. ). Gathering the lived expertise of ex-prisoners with an intellectual disability can help others to better understand these experiences. This article is about Anna Boodle's story of imprisonment in Queensland, Australia. Anna participated in a larger PhD study on the life stories of ex-prisoners with an intellectual disability. It is apparent from her story, and the other stories in the study, that there is a need for more humane responses to people with an intellectual disability who offend. Anna's story is a tale of hope to others that a good life is possible after imprisonment.
People with learning disabilities are at increased risk of coronary heart disease (CHD). Research suggests this may be due to inequalities in health status and inequities in the way health services respond to need. Little is known about the most effective way to improve health outcomes for people with learning disabilities. A previously developed CHD educational resource was piloted within residential community support organisations working closely with adults with complex learning disabilities. Following the training, improvements in knowledge of CHD-related topics were noted. Improvements were also seen in skills and confidence relating to working with others. Participant satisfaction with the training was demonstrated in terms of the acceptability and effectiveness of the training. Systematic training of this nature could lead to increased awareness of and attention to the cardiac health requirements of individuals, thereby improving the health outcomes, health literacy and ultimately self-management of people with learning disabilities.
This article reports on a study of how people do research that matters to people with learning disabilities and that involves them and their views and experiences. The study was an attempt to bring together people doing inclusive research so that, collectively, we could take stock of our practices. This would add to the individual reports and reflections on approaches that are already available. In particular, we wanted to explore what quality means in inclusive research and how we might best achieve this. We used focus groups to share and generate knowledge, and we recorded, transcribed and analysed the dialogue, looking for themes and answers to core questions. We found that there are many different ways of doing research inclusively, and we propose a model to describe this. Reflecting on the findings, we argue that it is important to keep a flexible vision of inclusive research and to keep learning and talking together.
A systematic literature review was undertaken to determine the evidence base underpinning the strategy of Self Directed Support and whether evidence demonstrates that this policy is accessible to everyone with a learning disability. It also sought to identify whether there were any barriers to Self Directed Support for people with severe or profound learning disabilities and, if so, how these barriers could be overcome. Four mixed-method research papers, two quantitative studies, seven qualitative studies and four literature reviews were identified. The findings indicated that very few studies pertain specifically to people with learning disabilities, and little account has been taken of their range of ability or the distinction between adults with legal capacity and those without. It is evident from the literature that Self Directed Support is not, as yet, attainable for everyone with a learning disability but those able to access it have reported an improvement in their quality of life. There is a need for further research to determine the extent of awareness and understanding of the policy of Self Directed Support, and the implications it will have on the future care of people with a wide range of learning disabilities.
Employment is widely acknowledged as a key factor to social inclusion, but it is estimated that <7% of people with learning disabilities are in paid employment. It was the aim of the research study to critically examine the experience of gaining employment from the perspectives of students with learning disabilities, parents, education staff and employers. All participants were recruited from one collaborating UK organisation, a college offering further education for young people with learning disabilities. Twenty-three interviews were conducted. Analysis of the data identified three themes surrounding the perceived roles of: Protector, Rescuer and Worker. Recommendations are discussed to improve collaborative working between student, parent, education staff and employer to overcome some of the difficulties influencing employment rates and contribute to the empowerment and inclusion of people with learning disabilities in society.
Concerned about practice that attempts to manage acts of intimate violence perpetrated by students with learning difficulties in a specialist college setting; I questioned the extent to which they could manage themselves. Following a methodological review of literature, I used critical conversations with focus groups participants and case study interviewees to consider the sense they make of intimate violence and students managing themselves responsibly in learning environments. Thematic analysis yielded five themes relating to different versions of students acting responsibly and/or irresponsibly: I've got a problem, I told staff, I can't, I'm disabled and I'm not normal. Discursive analysis highlighted five variable acts of resistance: Conditioned-Response, Role Specific, Inner-Conflicted, Retreating and Higher Order. These correlate with student's levels of differentiation from Binary Branding Normality Normalcy, Putative Social Identity and Multi-dimensional Social Network influences. In response to their subordinate position in learning environments, some students, via Variable Processes of Learning Disability Culture, use Defensive Disability Language, Defensive Positional Stances and Power Plays to assert their power over professionals; nevertheless, when invited to engage nondefensively, some students could, as evidenced by focus groups discussions and a case study example, manage themselves responsibly.
This article explores how career counselling at school contributes to supporting inclusive transition processes from school to regular vocational training and occupation for school-leavers with an intellectual disability. In a first step, a quantitative parent survey analyses how the type of school influences the recommendations of career counselling at school. Subsequently, the quantitative results are subjected to a more profound analysis by means of a qualitative teacher survey. The results show that career counselling at school functions as a ‘gatekeeper’ during the transition process from school to working life. In this context, the recommendations of career counselling at school are closely linked to the type of school attended. The majority of special school students are recommended occupational therapy, while the majority of students with special educational needs in general schools are recommended qualifying measures/vocational training. These results suggest that the recommendation of occupational therapy by career counsellors at school is closely linked to a negative attitude of teachers towards the cognitive abilities of students with intellectual disabilities. Segregated structures in the system also add to negative attitudes.
There are an increasing number of parents with a learning disability in the UK. Existing research in the area suggests that this group of parents face a number of issues including social isolation and over-representation in child protection systems. This study explored what parents understood about their learning disability and how they perceived this to impact on them in their parenting role. This exploratory study adopted a qualitative approach, involving semi-structured interviews with eight parents (three mothers, five fathers). The study suggested that as a result of having a learning disability parents experience some difficulties, however, these tend to be related to specific tasks only. In their parenting role, three separate identities were conveyed: as a person with a learning disability; as a mother or father, and as an individual (outside of their identity with learning disability or parenthood). The findings presented here are drawn from a larger qualitative study.
The Clinical Psychology Service and the Dietetic and Nutrition Service for People with Learning Disabilities in Birmingham shared concerns about the effectiveness of services offered to service users who were overweight. In an effort to gain more understanding of the issues from a service user perspective and to ultimately provide more effective services, a body awareness group was established, structured according to the ‘Health at Every Size’ model. Four adults with learning disabilities attended a total of nine sessions held once a week for a period of 2 h. Topics were presented to the group in the form of group discussions or group activities, which included: personal and social attributions towards body shape and size; self-esteem; physical eating vs. emotional eating; relationship with food (e.g. understanding of choosing junk food over healthier options); negative messages people tell themselves about eating and factors that prevent people from engaging in a healthier lifestyle. This study aims to report the process of designing and facilitating the ‘Body Awareness Group’ and to critically review observations and findings in an effort to gain greater understanding of the role of food in this context.
People with learning disabilities should be able to choose the staff who work with them. It is important that staff are chosen fairly and in a way that abides by the law. This article explains how we supported the people who use our services to help us employ an assistant psychologist.
We found that:
This article describes our experience of involving people with learning disabilities and additional needs, such as behaviour that can be challenging or mental health conditions, in the recruitment of staff. A significant amount of support, as well as additional time and adaptations to the interviewing and scrutinising processes were necessary in order to ensure that service users could contribute meaningfully. However, the process was not only really valuable for users and staff alike but also, in our view, efficient in choosing a robust applicant.
While the language of empowerment and human rights have taken centre stage in both the disability literature and disability service provision for adults with intellectual disabilities. One area where there exists a disconnect between theory and practice, in the Republic of Ireland at any rate, lies in the parental home and the role played by parents of adults with intellectual disabilities (this study focuses specifically on adults with Down syndrome) in acting as gatekeepers of their son or daughters social life. For the best of paternalistic reasons, many parents of adults with Down syndrome severely restrict the life choices of their adult sons or daughters. This is particularly the case when it comes to the regulation of their son or daughters sexuality, a possible effect of which may be to effectively deprive their intellectually disabled son or daughter of the opportunity of ever entering into an intimate sexual relationship with another human being. So are parents of adults with Down syndrome actually playing the role of ‘reluctant jailors’? If yes, how do they navigate the enormously tricky terrain that characterises the Scylla and Charybdis like tension between trying to empower their adult son or daughter with Down syndrome while at the same time doing all they can to insure they come to no harm? This study interviews ten parents on the earlier issues, to gain a greater phenomenological understanding on the predicament that many parents of adults with Down syndrome believe themselves to be in.
This paper provides preliminary findings of the impact of a workforce coaching intervention that used video feedback in a service for children and adults with autism. The proposed mechanism for change in the intervention was the way that video footage was highlighted through editing on the part of the practitioner and the positive coaching conversation that was used to review the video edits. Four participants who had received the intervention were interviewed after the intervention. Thematic analysis of the participants' responses during the narrative style interview was conducted. The results suggest that the participants found the intervention a positive experience that raised their confidence in their work role. They reported heightened awareness of the individual needs of the people they worked with and a new appreciation of the potential for relationship between themselves and the services' users.
The involvement of children and young people with learning disabilities in the decision-making of the services they use is recognised as an essential principle. However, implementation of this principle has encountered two main obstacles. One obstacle is that meaningful involvement has largely been subsumed by a provider-driven consumerist agenda. A second obstacle is the lack of methods to gain feedback that take account of an individual's cognitive and linguistic impairments. This article reports on the use of the social pedagogy approach to attempt to overcome these obstacles. The findings show that social pedagogy, which emphasises a balance between ‘head, heart and hands’, provided a means to establish egalitarian relationships with young people with learning disabilities. Thus, social pedagogy was found to be effective in enhancing involvement in the context of a person-centred approach.
Social identity has traditionally been established through face-to-face interactions. However, in recent times, social networking sites have provided an additional medium through which social identities can be developed and explored. Social networking has become increasingly popular over the past decade, attracting millions of active users worldwide. These sites offer an opportunity to maintain friendships, create new friendships and even date. The following article highlights the positive and negative experiences of three people with learning disabilities using social networking sites. The negative experiences reported by our service users highlighted areas of concern with regard to their safety. As a result, a therapeutic group was formed to address these online experiences and provide practical and emotional support. At the end of the group, service users reported that they were more confident about discussing and problem solving issues around online use.
People with learning disabilities are increasingly taking on the role of researcher within participatory research projects. This paper talks about what it means to be a researcher using the words, views and experiences of three people with learning disabilities who are currently working as co-researchers. It talks about what they have found helpful, and what they have found challenging. It compares their experiences to those of other people and highlights the importance of support. Overall they report that it has been a positive experience which has helped them to learn a great deal and they provide advice that they hope will help others thinking about taking on such a role.
This paper reports on a psycho-educational intervention associated with the sexual fetish of a man with mild learning disability and autism which centred on his use of nappies and baby paraphernalia. It outlines the nature and expression of his sexual fetish and the risks perceived to be associated with it and describes the approach developed to support him, including the aims which underpinned the work and the methods and processes employed. It was found that a person-centred psycho-educational approach from a rights based perspective achieved important changes in his life and self-esteem and helped challenge assumptions about his sexual risk. The paper also reflects on the organisational location of this work and identifies the applied learning for supporting the sexual fetish of people with learning disabilities, of value for informing sex education and sexuality support for people with learning disabilities more widely.
The introduction of the Mental Capacity Act 2005 has brought to the fore issues regarding capacity in various clinical settings. One important area where capacity assessment is often vital is regarding vulnerable people being able to consent to sexual relations. Case law from courts has evolved with regard to this sometimes complex and emotive issue both before and after the implementation of the Mental Capacity Act 2005. This article describes and analyses the evolution of such case law which predominantly involves people with learning disabilities. In doing so, it explains key principles and tests both for consenting to sexual relations and for the use of contraception which can be applied and used in clinical practice. The article also discusses the associated human rights issues for vulnerable adults in trying to balance the right to sexual relations as part of an individual's private life whilst managing potential abuse issues.
This audit is intended to investigate the effectiveness of a series of stand-alone groups delivered on an inpatient unit for individuals with learning disabilities. Our ward is a specialist assessment and treatment unit that provides brief admissions for clients with a learning disability, mental health difficulties and/or challenging behaviour. The aim of the unit is to develop an understanding of the presenting difficulties, formulate an appropriate intervention plan and implement this with the aim of successfully discharging the client back into the community following the shortest possible admission. Group interventions facilitated on the unit were drawn from a variety of evidence and best practice guidelines relating to specific interventions for individuals with a learning disability (Adv Psychiatr Treat, 11, 2005, 355) and more general interventions within inpatient settings (Clin Psychol Forum, 2009, 200). Nine sessions focused on a variety of relaxation, sensory and physical activity tasks. The objective of the audit is to investigate to what extent these interventions are perceived as helpful and enjoyable by clients and by staff, to investigate any positive effect on client's mood and to determine whether any particular activities were rated more favourably than others. Additional aims of the audit are to further understand some of the practical issues related to delivering group-based interventions in an inpatient environment, to engage ward staff in the delivery of therapeutic activity and to investigate the use of groups as an effective way of developing therapeutic relationships.
This study evaluates the usefulness of a bereavement group for four adults with learning disabilities. Drawing on the work of Boyden et al. (2009), the current authors planned and facilitated an 8-week group, held in the local community. Qualitative and quantitative feedback was collected from participants, which indicated that they valued the group as a safe and useful space to talk about their bereavements and to learn skills to manage difficult emotions. This study reports and reflects on the process of establishing the group, developing the session plans, delivering the intervention and collecting feedback.
A small evidence base suggests that parents with learning disabilities are likely to have their children permanently removed from their care. There is no known research involving magistrates in England, despite their role in care proceedings. This study aimed to explore the experience of magistrates making decisions in care proceedings involving parents with learning disabilities. Four family court magistrates took part in a semi-structured interview. The findings suggest that the magistrates in this sample perceive a distinction between themselves and others in terms of their ability to accommodate complexity in conceptualising learning disabilities. The ability to appreciate such complexity was considered important by magistrates in them adopting a more proactive role when presented with expert opinion. Four main influences were spoken of when determining the best interests of the child: timescale and age of the child, expert opinion, parenting abilities and support. Participants indicated how their experiences with people with learning disabilities outside of the court system have impacted on their role within care proceedings and have shaped their awareness of the limits of their own knowledge. Magistrates indicated a general need for more training about learning disabilities. Limitations and implications for practice are discussed.
This paper reports on the key findings from a review of the literature on future planning for adults with a learning disability who live with older parents and carers. This area has gained attention in recent years, owing to the improved life expectancy of people with a learning disability and the increasing number who now outlive their parents. For those currently living with older parents and carers, this has major implications for the future, with the likelihood that formal services will eventually take over the care role. It is suggested that the presence of a plan for the future, formulated at a time of stability and in advance of any crisis, may lead to improved outcomes for this next phase of life. However, regardless of several policy initiatives to encourage active planning for the future, the take-up rate remains poor. This review of the literature seeks to offer an explanation for this through identifying the barriers to future planning as experienced by people with a learning disability and their older carers. The evidence suggests that there are ten key barriers to engagement in future planning. Consideration is given to each of these in turn, and a common thread is identified, that of the quality of the relationships between the families and the professionals who they come into contact with. Gaps in the research are considered, and the need for further work identified to reflect the views of black and minority ethnic families and so-called hidden families who are not known to statutory services. Also highlighted is the lack of participation in the research of those people with more severe disabilities who use alternative methods of communication.
In the UK, policy on adult social care places an emphasis on maximising choice and control for service users, including people with learning disabilities. The shift from the provision of organised services for groups of people to offering individual and personal budgets and pots of money for people to buy their own services has major implications for the way in which people with learning disabilities are offered the opportunity to be much more ‘hands-on’ with managing their own financial affairs. Some of the financial implications of personalisation are arguably quite complex, and it is not clear how well people with learning disabilities are being supported with this. This paper highlights some key and emerging issues on the topic of money and personalisation and draws on interviews with a range of staff in learning disability services and highlights their views, hopes and concerns about the best ways to support people with money matters. The response of mainstream financial institutions to the needs of people with learning disabilities and the political and economic context in which the personalisation agenda is developing are also discussed.
Clinical psychologists are well placed to work with people with learning disabilities given the high prevalence of psychiatric disorders in this population and the specialist training undertaken by psychologists. The evidence for psychological interventions in learning disabilities is scarce compared to the evidence for mainstream psychological interventions. This is because of the methodological issues in conducting quantitative research. A way forward to add to the evidence is to use qualitative methods to investigate the views of people with learning disabilities. The aim of the present study was to explore the views of eight people with learning disabilities about their experiences of working with clinical psychologists. Thematic analysis revealed three themes from the narratives: the therapeutic relationship, change and the expectations/perceptions of participants about clinical psychologists. When developing the quality of clinical psychology services for people with learning disabilities, providers should consider the views of people with learning disabilities in accordance with government policy. Limitations of the study are highlighted and further research suggested.
We live in an increasingly sexualised society, and the buying and selling of sex is a feature of this society. The laws about prostitution are complex, but the act of selling or buying sex is in itself not illegal. The author has extensive clinical experience of hearing the stories of men with learning disabilities who do use commercial sex workers and often come to harm in the process. There are other sex workers who have considerable experience of serving people with disabilities, and to date have generally served people with physical disabilities. Section 39 of the Sexual Offences Act makes it a serious crime for care workers to assist people with learning disabilities to engage with sex workers. It is argued that this is contrary to the spirit of Equal Opportunities for people with learning disabilities and against the move towards personal budgets and the freedom to spend them. This law should be reformed. Prostitution is inherently exploitative of women and reinforces the dominant message that women's bodies exist for men's pleasure. This is not a helpful message for men and women with learning disabilities. However, the opinion of this author is that people with learning disabilities should not be expected to shoulder by default any moral responsibility for changing social attitudes. The extra obstacles in the way of accessing sex workers amount to discrimination, and this is wrong.
People with learning disabilities have higher levels of health needs compared with the general population (Nocon, 2006, Background evidence for the DRC's formal investigation into health inequalities experienced by people with learning disabilities or mental health problems. London and Manchester, Disability Rights Commission). Research has shown that these individuals receive less effective health care (Michael, 2008, Tizard Learn Disabil Rev, 13: 28) and has explored the challenges and barriers in accessing health services (Jackson Brown & Guvenir, 2009, Br J Learn Disabil, 37: 110). This case study describes the experience of a child with a severe learning disability and his family accessing mainstream health care for a simple medical procedure. Implications for how healthcare services can be organised to meet the needs of learning disabled people are discussed, addressing issues such as physical environment of surgeries and hospitals, communication between staff teams, staff skills and lack of preparedness.
Young people with autism were involved in a study examining the participation of young people with autism in drama education. This study considers the approaches devised to obtain consent from ten young people with autism who communicated in different ways. The process of obtaining consent and monitoring assent is outlined and evaluated. The research illustrates that young people with autism who communicate in different ways can give their consent and be helped to understand what it means to be involved in research. Challenges specific to researching a group of young people with autism are considered and implications for future research presented.
A new risk assessment tool, Assessment of Interpersonal Risk (AIR), was piloted and evaluated to measure risk factors and compatibility between individuals living in an assessment and treatment unit in one NHS area. The adults with learning disabilities in this unit had severe and enduring mental health problems and/or behaviour that is severely challenging. The aims of this small-scale research project were to estimate the reciprocal risk to and from each individual across five main risk domains and to enhance professional judgement to make defensible decisions about interpersonal risk. Data were recorded on incidents involving five individuals over a period of 6 months. Individual Rating Profiles were incorporated into existing Individual Risk Management Plans, together with interpersonal profiles, recording risk evaluations between named individuals across the five risk domains. Results showed that the AIR tool may be a useful addition to existing effective risk management, to inform assessments and future discharge planning.
The effectiveness of group therapy for people with learning disabilities and anxiety management issues is reviewed. People with learning disabilities face increased levels of psychological distress compared to the general population, yet are often faced with a lack of social support and poor coping techniques to manage their distress. A 6-week cognitive behavioural therapy (CBT) anxiety management group was delivered to eight adults with a mild learning disability by a trainee psychologist and an assistant psychologist. Participants' ages ranged from 17 to 73 years. All participants lived in the local community. Not all participants had a specific anxiety diagnosis, but all required anxiety management input. A mixed methodology using quantitative and qualitative analysis of group outcomes was used. The outcomes from this group suggest that the intervention was successful in treating anxiety for people with learning disabilities. Measures included the Quality of Life Scale, the Glasgow Anxiety Scale and the Health of the Nation Outcome Scale–Learning Disability Version. Interpretative Phenomenological Analysis (IPA) was also used. Data from interviews were coded and analysed thematically. The main themes that emerged included group versus individual input, helpful aspects of the group, talking in front of other people, group composition (including age differences), support partners, and written materials. The outcomes for this group suggest that the intervention was successful in treating anxiety for people with learning disabilities. Practical applications of group therapies for these clients are considered, and recommendations for future groups made. Quantitative and qualitative evaluation methods are compared.
The following article introduces the Solihull Approach, a structured framework for intervention work with families (Douglas, Solihull resource pack; the first five years. Cambridge: Jill Rogers Associates, 2001) and aims to demonstrate the usefulness of this approach in working with school-age children with complex neurodevelopmental difficulties in a community Child and Adolescent Mental Health Service (CAMHS) setting. More specifically, it aims to show the efficacy of this approach in intervening with sleep problems, which are prevalent amongst children with learning disabilities. The authors hope to achieve these aims through the use of the qualitative case study method, which allows for a rich account of the intervention and therefore facilitates a detailed understanding of the psychological phenomena and processes involved in the approach (Dallos & Smith, Clin Psychol Forum 2008; 182, 18). The three theoretical concepts central to the Solihull Approach – containment, reciprocity and behaviour management – are used to describe the intervention, which resulted in a positive outcome. Implications for clinical practice and future research directions are discussed.